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EPF publishes its position on Data Protection

Patients’ fundamental right to protection of their personal data is an important issue in diverse contexts. EPF released on 10 December its position statement on the European Commission’s proposal for a Regulation on personal data protection. This will ensure the patient’s voice is heard in debates on the use of patients’ health and genetic data in healthcare and research.Patients’ health and genetic data are sensitive information which requires a high level of protection to ensure they are not unnecessarily disclosed. At the same time, the appropriate sharing of this data is absolutely crucial for the good functioning of healthcare services, patient safety, and to advancing research.

EPF welcomes in principle a stronger and more coherent framework for the protection of personal data. Our key concern is that the right balance needs to be reached between ensuring confidentiality of data on the one hand, and allowing its availability and sharing for public health, healthcare and research purposes on the other hand.

We strongly recommend that the EU institutions ensure that individual right which apply to patients –access to one’s personal data, transparent information about processing, and the right to be forgotten or to erase data – are effectively implemented, with patient friendly information and transparent processes.

EPF also calls for more cooperation between Member States on minimum security requirements to ensure an equivalent level of protection of personal data shared by patients across the European Union, and facilitate cross-border healthcare and research.
MEP Jan Phillip Albrecht (EFA/Green, Germany) is expected to release his draft report in January. It is then forecast that the Civil Liberties, Justice and Home Affairs (LIBE committee) will vote on the report in March or April (provisional information).

For more information, please contact laurene.souchet@eu-patient.eu